Abstract

Introduction: Despite the prevalence of various cancers among Latino populations, this demographic is underrepresented within cancer clinical trial (CCT) participants. A potential barrier to Latino participation involves the manner in which Latino patients are informed of available trials. Moreover, little is known about interactions between potential CCT Latino participants and their family members and how they influence the decision to participate. Therefore, the goal of this study was to examine the ways in which Latino cancer patients describe communication about CCTs, including availability of CCT-related information and family communication about CCT-related decisions.

Methods: Methods employed in this study included thematic qualitative analysis of interviews with Latino (n=16) and non-Hispanic white (n=15) patients treated at a Minority-Serving Academic Cancer Center. The semi-structured interviews explored participants' experiences with CCTs – including factors that affected their decision to participate, such as family member input and the manner and extent of patient-provider communication.

Results: Analysis of the results thus far have revealed several prominent themes. First, patients in general did not demonstrate complete understanding of their diagnosis, treatment details and objectives. Similarly, they did not fully understand the implications of CCTs. Second, most participants did not actively seek information on CCT opportunities, but were willing to participate in a CCT if given the opportunity. Differences between Latino and non-Latino patients included altruism as a common motivation for CCT participation for Latino patients, preference among Latino patients to obtain CCT information directly from physicians alone, and placing higher value in consulting family members when deciding to participate in CCTs. However, virtually all families interviewed felt that the ultimate decision was the patient's alone.

Discussion: Several important implications stem from these results. First, it appears that low CCT participation rates amongst Latinos are not due to a lack of interest, but rather a lack of awareness. Our early findings suggest that if more efforts were made to educate Latinos regarding CCTs and their validity as an approach to cancer treatment, the disparity seen to date could be reduced. While many Latino patients expressed a preference to receive the specific details about CCT treatment directly from physicians, many had suggestions of using new mediums – non-medical websites, magazine subscriptions, and community outreach programs – to increase awareness of CCTs among Latino cancer patients. Implementing these suggestions could also potentially create an opportunity to emphasize that CCT participation may not only benefit the patient, but future cancer patients as well. Lastly, our findings suggest that involving family members in the educational process may help participants understand and draw significance from the vast amount of information presented and reach a decision that better suits their needs.

The findings and conclusions of this study highlight a valuable opportunity: to address some of the barriers that Latino cancer patients face, and tailor CCTs to actively seek out and include a population that better represents the United States as a whole. Not only would this facilitate delivery of new treatment options to a historically underserved population, but could lay the foundation for other similar research efforts that seek to understand and alleviate barriers to CCT participation that are unique to other minority groups.